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One of the many non-fun parts of being a paraplegic is having problems w/ body functions... As is fairly typical for my injury level, I have a "neurogenic bladder" meaning that I can't pee voluntarily, and have to use an intermittent catheter.

While I am mostly able to feel when I need to go, it isn't as consistent as it is for an able bodied person, sometimes I'll get an urge very shortly after the previous time, sometimes far later than I should, so I also tend to use time... However over the years my bladder has stretched to the point where I can hold over a liter (normal max is about 400cc).

It used to be that I didn't leak at all when going about my daily activities unless I was REALLY full... Now I seem to seep a little all the time, and will fairly often lose a few drops w/ effort (stress incontinence). It isn't bad enough to give me externally visible wet spots, but I'm 'damp' more of the time than I'd like...

The problem has gotten considerably worse in the last few months as I've been doing the chemical castration route... I suspect that at least some of this is because I'd expect that my prostate is shrinking. I have long thought that the prostate acts as a sort of 'secondary sphincter' and helps keep guys from leaking... I know I always used to feel it as a bit of an extra barrier to work past when inserting a catheter, and it isn't as noticeable these days...

Does this seem right? How often does castration (chemical or surgical) seem to lead to continence issues?

The problem has gotten to the point where I feel a need to start using some sort of protection products, and I was wondering if there is anything different to consider for us when choosing something? FWIW, while I still have balls and scrotum in (I think) fairly normal size, my penis is shrunken to pre-puberty size...

Any comments / Suggestions?

WheelyCurious

I always try to have a toilet close by as I have a short urethra and don't have the stamina to hold a large volume in my bladder (certainly no more than 400cc).

I have already got used to take into account this peculiarity of mine, as I am afraid of being in an awkward situation ...

With you being paraplegic you don't have many conveniente options, protection products require mobility that you don't have on your own. You may want to look into switching from using intermittent catheters to Folly catheterization. I know a few people that use Follys 24/7/365, they find it easier to deal with than diapers and there are many options in collection devices.

Keep in mind, hormones or not, that as we age, things begin to break down! I think it was a Grumpy Old Men movie where one of the guys said: "I get up, and wonder, what's not working today?" For those who are mechanically inclined, it's not so easy as changing a valve cover gasket or a radiator hose to stop a leak!

Of course, I can't speak to Wheely's issue, combined with his T-5, AIS-B injury, other than what I can read about it and what he tells us.

Me, I always need to know where I am going when I plan a day out for shopping, etc., and where all the bathrooms are on my route. I'm closer to 60 than to 50 now, you know! I used to get a 2-minute warning when I had to go. Now I get a "you're about to be in trouble!" warning!

From what I have read, when deprived of testosterone, the prostate shrinks. Of course, we all know that as men age, all the testosterone from over the years causes the prostate to enlarge some (BPH) and can make urination difficult, if not impossible when ignored long enough. Take away the testosterone, and it shrinks some.

I also have to wonder if in the case of a neurogenic bladder, if the constant forcing-open of the sphincter that doesn't work on its own might have loosened it over time, much like plumbing valve that's being forced open over and over - it loosens up and leaks.

Just my 2 cents there.

Nihado, Thanks for the suggestion, but I ended up on a Foley for about a month after I got a 'false passage' from a different catheter that I was sampling. I found that for me it was a totally miserable experience. They used to stick convicts with a ball and chain, I felt like having a hose and bag wasn't much different... It is probably less of a concern for quads that need a lot of assistance w/ things besides that, but as a fairly active para I found that it was just a constant nuisance.

Paolo, what you say makes a lot of sense, and I know that enlarged prostates cause problems, I have never seen anything either way about what happens when they shrink... OTOH I know that reportedly women have more issues w/ leakage and they are relying on the sphincter only...

At any rate, as an experiment I have just ordered a package of the "Amazon Basics" male guard pads to see if they will work for me... If they do I will try to get my urologist to write a scrip as that might get my insurance to cover them...

WheelyCurious

Paolo wrote: Sat Nov 26, 2022 2:31 am Keep in mind, hormones or not, that as we age, things begin to break down!

Me, I always need to know where I am going when I plan a day out for shopping, etc., and where all the bathrooms are on my route. I'm closer to 60 than to 50 now, you know! I used to get a 2-minute warning when I had to go. Now I get a "you're about to be in trouble!" warning!

I am closer to 80 that 70 and have to make adjustments also.

There was a time that I wore pullups when driving, but then developed a new strategy - preventative peeing. I do not wait for the two minute warning. I pee when I get the slightest feeling. I do not have to worry about pullups - for now.

An update and related question....

I got in

WheelyCurious wrote: Sat Nov 26, 2022 8:23 am the "Amazon Basics" male guard pads

and have been trying them for the past week or so, and overall am reasonably happy with the experiment... But it could be better...

The good stuff:

First off the obvious is that they are keeping me drier, which is the point of the things after all... The absorbing pad behind the 'moisture passing fabric really works. The pads don't even feel damp when I pull them off at the end of the day....

Second is that they seem to hold my balls up higher so they aren't as pinched between my legs while sitting in my wheelchair - the typical Y-front briefs I've been wearing most of my life didn't do that... So while in some ways I feel like I'm wearing one of those medieval codpieces, I'm actually more comfortable...

The "could be better" stuff:

Before I started using them, I'd drag the 'equipment' out through the 'man-hole' in the briefs. The pads cover the hole, so I have to go out to one side which is a bit awkward and then takes a fair bit of fiddling to get everything back where it belongs afterwards.

Also currently my balls and scrotum act as sort of 'door-stops' to hold the underwear out of the way while doing the whole catheter routine... I'm anticipating that when I am finally able to get my desired surgery and don't have the scrotum and balls anymore, that it will make this aspect a bit more of a challenge....

Lastly when I remove the pad to throw it out before going to bed, it is a bit of a struggle to get enough room to peel the adhesive off the underwear and pull the pad off while still seated...

This leads to the QUESTION.... My adaptive pants have zippers that allow me to open and fold them away from my crotch, giving me access to my underwear... The logical next step would be to have a similar 'fold aside' or 'trap door' front to let me get them out of the way. Think something along the line of a diaper, or the traditional 'union suit' long underwear with the trap door on the front...

I did a quick look on Amazon and didn't find anything... However I've noticed in passing that many of the members here on EA choose to wear underwear other than the 'standard male' sorts so I wonder if anyone here has seen such a thing, and can give me a pointer?

I presumably could head over to the fabric arts shop and create something, but why reinvent the wheel?

Thanks,

WheelyCurious

Go soft wear snap boxer brief.http://www.internationaljock.com/go-sof ... hu0cOEDjhU 3hhGia_24Qj6HbDVkUWuOPZlpCWFryLjmC8aAkpnEALw_wcB

I wonder how astronauts solve such issues?

Of course, the ladies are much more difficult than the gentlemen ...

I heard that something like a vacuum suction is used?

Your're right it's some kind of vaccum to collect specifically the urine and then they use it in a purificaton process to extact all the water and of course they drink it back.

An economical way to reduce the amount of water delivery from earth which is very costly.

wanasoso2 wrote: Sun Dec 11, 2022 2:46 am Your're right it's some kind of vaccum to collect specifically the urine and then they use it in a purificaton process to extact all the water and of course they drink it back.

An economical way to reduce the amount of water delivery from earth which is very costly.

But what about "solid waste"?

But what about "solid waste"?

My recollection is that solids are 'freeze dried' and reduced to powder which is stored for return to earth.. They don't eject it overboard as they don't want to increase the amount of debris in orbit, as that would increase the risks to future space activities.

Supposedly there are related systems available for folks w/ disabilities, but they aren't very popular, probably due to their cost and complexity.

WheelyCurious

Family history of prostate cancer. I have had Benign Prostate Hyperplasmia, instead of being acorn sized, it's a lemon sized. I was on Flomax for a long time until the body decided that it wouldn't work anymore. Had the TERP surgery, burn a wider hole with laser. So I swapped frequent urination for unexpected leakage. During my waking hours I practice preventative urination. At night it's not an issue and I get 6-8 hours of uninterrupted sleep. One more problem of aging.

I'm a paralyzed t10 waist down. I have solved this problem. By always blader pads 6 drop size fold in half sticky side together

Then by some women hipster nylon spandex panties, maden form are good with or with lace trim your choice. They hold the pad in place and are super easy to put on if your have a leak just throw it and put a new one in. Also my urologist does a procedure 3 times a year in which they inject small amounts of Botox inside the bladder and it greatly reduces bladder spasming

Well, @WheelyFixed, you can count me in, as I definitely have leakage problems. I have been dealing with OAB for quite some years both wet and dry, managed with pads. Meds didn't work, all they did was making things worse. Then it happened, I got a massive inflammation in my bladder and had blood in my urine. I was enrolled in a cancer program and got fast tracked through, that is cystoscopy, CT scanning, biopsies (holy Christ that hurts like hell) finally got a diagnosis of a special version of Interstitial cystitis, they asked if I had been traveling to Africa, as it's really rare the the type I have, well I haven't been in Africa.

Anyhow, the inflammation shrunk my bladder capacity from small to very small, and I'm now fully unable to hold back when an urge to pee hits, and I get these urges like 30+ a day. When it's at its worst I'm past 60 times on a normal day, with normal fluid consumption. So I'm no longer using pads but something more heavy... and i get the supplies from the state for free.

Luckily I got cleared from cancer back then, however they did offer to remove my bladder and give me a bag, that was a big No thanks, as that has its own series of problems, I think they gave me that solution because of my insanely small bladder capacity. Instead I was offered bladder instills of Ialuril something new, and god damn expensive. I think it helped with the pain, only occasionally do I get flares and they hurt like hell, no painkillers can deal with it, and I have an arsenal of pretty strong ones, but to no avail. So I'm still 100% incontinent, also the urologist did say to me I shouldn't get my hopes too high in that regard, and he filed the application for "medical supplies" from the state.

On Thursday I'm going in for another bladder biopsy as they cultivated the samples from my first biopsy again, and even though I was cleared back then they saw something in the new examination that worried them, so sadly I'm not off the hook yet. Good thing is now I'm being monitored and will have to undergo these biopsies every fourth month, and if fingers crossed nothing bad is to be found I'll eventually only have to endure new biopsies every twelve months, also if something bad is discovered during these frequent biopsies they can fix it in the early stages, I guess radiation? at least I'm telling myself that story.

I have to have something positive to think about....

Deep inside, I'm scared, really scared, but I'm not admitting it to myself, as I would mentally go down, really deep down.

That sounds really bad JM, I hope that you at least don't find it to be anything worse than what you already know about... I don't think I'd want the surgery either in your position, but I might consider doing the Foley cath approach.... That also has issues but seems to me like less of a problem...

I haven't dug into it since I'm not on a Foley, but there has been some level of excitement lately in the SCI community about a gizmo invented by a Foley using quad... He was having some issues relating to the catheter, and started wondering if they were related to the fact that a Foley is a constant drain, so the bladder doesn't get any of it's normal stretching as part of the usual fill / drain cycle... So he tried making a 3D-printed clamp worked by an Arduino controlled solenoid, which would alternate clamping and unclamping the Foley (I think he said he initially used a 15 minute cycle) and thus 'exercise' his bladder... Supposedly at his next exam the doctor was amazed at how much healthier his bladder looked, and then got upset that his patient dared to experiment with a non-approved device.... (Sounds like typical "doctor = GOD" behavior)

I'm still working on my adaptive / accessible underwear design... I'm hoping V3 (currently under construction) will be good enough to wear-test instead of just try on and make a list of what didn't work....

WheelyFixed

WheelyFixed wrote: Tue Feb 20, 2024 9:56 am That sounds really bad JM, I hope that you at least don't find it to be anything worse than what you already know about... I don't think I'd want the surgery either in your position, but I might consider doing the Foley cath approach.... That also has issues but seems to me like less of a problem...

I haven't dug into it since I'm not on a Foley, but there has been some level of excitement lately in the SCI community about a gizmo invented by a Foley using quad... He was having some issues relating to the catheter, and started wondering if they were related to the fact that a Foley is a constant drain, so the bladder doesn't get any of it's normal stretching as part of the usual fill / drain cycle... So he tried making a 3D-printed clamp worked by an Arduino controlled solenoid, which would alternate clamping and unclamping the Foley (I think he said he initially used a 15 minute cycle) and thus 'exercise' his bladder... Supposedly at his next exam the doctor was amazed at how much healthier his bladder looked, and then got upset that his patient dared to experiment with a non-approved device.... (Sounds like typical "doctor = GOD" behavior)

I'm still working on my adaptive / accessible underwear design... I'm hoping V3 (currently under construction) will be good enough to wear-test instead of just try on and make a list of what didn't work....

WheelyFixed

Had the biopsy done, with local anesthesia. It wasn't too bad, but did hurt though. The urologist didn't believe it was pre-stage of the big C, but merely persistent inflammation. I also had a shitload of white blood cells in my urine, which is an indicator of UTI, but I have this on-off all the time, the beauty of interstitial cystitis although I'm not having pain ATM. But the nurse was all over the place saying I should take medication, do bladder training, pelvic floor exercises, you name it. Apparently she hadn't read my journal and I ended up being really pissed in the end. I have done all of this, to no avail. I have been dealing with OAB for a decade or so, mostly dry.

Foley catheter has been tried, it clogs in less that 24 hours, and results in significant bladder pain....

Anyways, long story short, I'll know more from the biopsies in a couple of weeks.

Sometimes it's a pain dealing with medical types that mean well but don't necessarily bother to look at your history or all the stuff that goes with a secondary condition... One of the battles I occasionally have is that I am almost always colonized w/ bacteria in my bladder, which is normally a UTI indication that immediate treatment is needed... However if one looks up the standards of care for SCI patients they basically say that because we catheterize it is almost impossible to avoid colonization, so the only time they should even test, let alone treat, is if we have OTHER symptoms, like fever, pain, etc. and then the primary reason is to figure out what the most effective ABX would be... I am always having to talk them out of dosing me when I don't have symptoms unless I know that I'm up for a procedure in that area, in which case I have to suggest that they DO a test in advance, so they don't need to cancel on the day of because of a positive test...

You know your history details much better than I do, but the guy I mentioned above said he was having similar problems w/ clogging and pain... He started the experiment in part because he wondered if making his bladder do more of a 'fill / drain' cycle would do a better job of flushing out the crap than just the slow dribble you get w/ a Foley... It also would cause just how the Foley sat in his bladder to change relieving pressure points. Another concern which is a problem for a lot of long time Foley users is that the bladder tends to shrink down and lose elasticity, which he figured this sort of fill cycle would discourage.... At least from where I sit, I hope to never end up on a long-term Foley, but I'd definitely be trying this approach if I did....

WheelyFixed

Even with a foley in my bladder as I had yesterday because they had to inject fluid to numb my bladder before taking biopsies, they blocked the foley in order to have the fluid stay in my bladder (I'm not able to hold anything in my bladder, hence the protection I have to wear). I got some very strong bladder spasms during this waiting time, and when it was time for the biopsies, the nurse opened the valve in the foley, to let it drain out. Well, my bladder apparently had pushed the fluid out, despite the inserted foley during one of these spasms.

I think they mentioned that the foley they inserted was a size 14FR, and still I managed to empty my bladder.

And to be honest, I'm not too keen on the idea of having to wear a back filled with urine fearing it may tear....

WheelyCurious wrote: Thu Nov 24, 2022 10:05 am One of the many non-fun parts of being a paraplegic is having problems w/ body functions... As is fairly typical for my injury level, I have a "neurogenic bladder" meaning that I can't pee voluntarily, and have to use an intermittent catheter.

While I am mostly able to feel when I need to go, it isn't as consistent as it is for an able bodied person, sometimes I'll get an urge very shortly after the previous time, sometimes far later than I should, so I also tend to use time... However over the years my bladder has stretched to the point where I can hold over a liter (normal max is about 400cc).

It used to be that I didn't leak at all when going about my daily activities unless I was REALLY full... Now I seem to seep a little all the time, and will fairly often lose a few drops w/ effort (stress incontinence). It isn't bad enough to give me externally visible wet spots, but I'm 'damp' more of the time than I'd like...

The problem has gotten considerably worse in the last few months as I've been doing the chemical castration route... I suspect that at least some of this is because I'd expect that my prostate is shrinking. I have long thought that the prostate acts as a sort of 'secondary sphincter' and helps keep guys from leaking... I know I always used to feel it as a bit of an extra barrier to work past when inserting a catheter, and it isn't as noticeable these days...

Does this seem right? How often does castration (chemical or surgical) seem to lead to continence issues?

The problem has gotten to the point where I feel a need to start using some sort of protection products, and I was wondering if there is anything different to consider for us when choosing something? FWIW, while I still have balls and scrotum in (I think) fairly normal size, my penis is shrunken to pre-puberty size...

Any comments / Suggestions?

WheelyCurious

Sorry you are dealing with this. Seems you have quite a bit on your plate.

Yes, there is a sphincter at the prostate. When they do a TURP (Trans-Urethral Resection of the Prostate) they essentially cut or remove tissue at that valve to allow the urine to move freely through the prostate. Typically this is done when it is difficult to fully empty the bladder, due to BPH or other issues. I had a modified version of this done several years ago due to retaining around 250 ml in my bladder after voiding (I too have larger than normal bladder). I had been dealing with incontinence issues including sudden flooding. The urologist felt this was due to not emptying fully, then filling to the point of almost violent voids. While the surgery did, in fact, help with emptying, it also took away all control I had, which put me in diapers full-time.

Fast forward a couple years and we started down the chemical castration path. After several months of Depo and Estrogen I found some control returning, which prompted me to really start focusing on trying to hold it/regain control. About a year or so into the meds, I had gotten to the point that I no longer needed protection, which was fantastic. My wife is convinced that the meds are the primary reason I regained control. In her mind they affected the prostate in some positive way. While I'm not 100% convinced it was the meds, after going off of them for some time, I did find the IC issues returned at night. So I think that chemical castration could be playing a role in your situation. Having dealt with incontinence for several years and done a fair amount of research, the funny thing about IC is that much depends on the cause (if a cause can be determined) and also the fact that people seem to respond differently to treatments, have differing symptoms, etc.

As to the medical profession, while I think they have good intentions, I sometimes get the feeling they are clutching at straws. It's like they take it personally and feel defeated if they can't "fix" things through meds or surgery. I finally gave up on meds, as the side effects were unacceptable and settled on diapers. I don't think my urologist or PCP were happy about my choice, but I was able to manage it and get on with my life.

I agree, it definitely seems like the medicos don't know anywhere near as much about what they are doing as they try to make us think they do... Then they get upset when we call them on it!

My situation has now changed a bit, though hopefully not long term... I'd been expecting that I wouldn't be having any prostate issues after almost 2 years on estradiol, plus getting last September, but lately I've been having intermittent problems w/ getting my intermittent catheter to go all the way into my bladder.

It seems like it would get hung up ~3/4" or so before going in, but if I kept a bit of pressure pushing in on it, after a few seconds it felt like it found the right place and shifted a bit then popped in the rest of the way... I wasn't terribly concerned, but a few nights ago I suddenly found I had a major difficulty, it took me multiple tries, a lot of position changes, and then felt more like luck that I got the cath to go in at all...

I called the 'on-call' doc, and he advised me to head into the ER - which I did. They put in a Coude type Foley, and I'm now using a bag until I get to see the Urology folks on the 13th, and see what they think...

Ironically, earlier that day I'd gotten a message from my PCP that the 'research dept' had told him that I was at a higher than usual risk of prostate cancer because of family history - so did I want to do PSA testing? He thought I was not at a lot of risk because of being on E, but wanted my thoughts... I was inclined to anyway, but I also posted the question here (see the PSA thread) and was emphatically advised that I should.... (Essentially that anyone w/ a prostate should be tested, regardless of other status...)

I just hope they can figure out and fix the problem, as I really don't want to be stuck w/ an indwelling cath and bag long term...

WheelyFixed

I use VaPro plus catheters. They are completely sealed with a small bag. Easy and discrete. I also have Botox injection into my bladder 4 times a year to reduce spasiams. The biggest help are using always 6 drop bladder pads and I fold them in half. I also wear stretchy women's panties that hold them in place.

Gfbi7890 (imported) wrote: Tue Mar 05, 2024 1:41 pm I use VaPro plus catheters. They are completely sealed with a small bag. Easy and discrete. I also have Botox injection into my bladder 4 times a year to reduce spasiams. The biggest help are using always 6 drop bladder pads and I fold them in half. I also wear stretchy women's panties that hold them in place.

I'm bad about not cathing as often as the docs tell me I should, and as I recollect the VaPro's only have a 750ml bag, which I'd consistently overflow... I had been using the Cure Medical (made by Convatec) CS-14 kits which have a 1500ml bag which works better for me, and has all the other supplies that you might need in the kit. I don't know what will change given the latest issues.

One advantage of the bag is that leakage isn't an issue, so I'm not using pads now. However I've been using the Prevail "Male Guard" pads which are pretty high capacity. I'm also still using the "tighty-whitey" guy's briefs I've been using most of my life, even though now they are sort of baggy The only problem w/ the male guard pads (and the comparable Amazon Basics pad) is that it has a fold in the middle which results in a gap between me and the pad - probably made worse by the baggy men's underwear... I'd been working on designing some 'drop front' underwear to make access for cathing easier and make the fit better, but that is now on hold until I find out what is happening w/ the bladder issues.

WheelyFixed